Still smiling until the end, that is how Carly Hadman will remember six-year-old daughter Effie who has sadly passed away from Late Infantile Batten Disease.
Effie touched the hearts of many people in Whittlesey who had showed brilliant support for the brave little girl ever since she was diagnosed with her incurable condition four years ago.
Mum Carly said: “We are devastated that she’s gone. She was so strong, such a fighter to the end, still smiling. She never lost her fighting spirit.
“We feel so lucky that we got to have her in our lives. She did a lot more than some will do in a lifetime. She was so young but she touched a lot of people. She was an amazing little girl.
“We are really grateful to the community - they have been fantastic in supporting us all the way through.
“She was so amazing. Right up until the end we were still getting smiles. She really told us the meaning of life. She made the very most of every day and was just an inspiration.”
Fundraising for Effie included a match between Posh Legends and REC Whittlesey which funded a hydrotherapy bath so it no longer took three people to bath her.
Funds were also raised at a Dogsthorpe Fire Station Open Day for a special trolley which was designed to hold a supportive chair and make it easier for Effie’s family to move her around.
And Effie even got to go on a once-in-a-lifetime trip to Disney World in Florida with parents Carly and Paul and younger brother George (3).
Carly said “George will never forget Effie. He keeps pointing to the sky.
“He talks about her all the time.”
Late Infantile Batten Disease is a disorder of the nervous system which severely restricted Effie’s mobility and sight and led to seizures.
She was an energetic toddler who began suffering seizures in January 2013 before being diagnosed with the condition.
She was not expected to live long enough to be a teenager.
Effie’s funeral was held at St Mary’s church in Whittlesey last week.
Carly said: “The church was packed. The whole of Whittlesey came out to support us.
“It reminded us how many people loved Effie.”
Family grateful for hospital help
The Hadman family have thanked staff at Peterborough City Hospital’s Amazon Ward and East Anglia’s Children’s Hospices (EACH) for the care they gave Effie during her life.
Mum Carly said: “The Amazon Ward were absolutely brilliant.
“We could not have wished for better help.
“They put us at ease.
“We also had a lot of support from EACH who have been fantastic.”
Effie passed away while on the Amazon Ward.
The family are now hoping people will donate to EACH or Sponsor a Sibling.
The latter’s aim is to “make siblings of life-limited or life-threatened children smile and bring comfort to bereaved siblings.”
The charity delivers gift bundles which according to its website includes a movie night pack. This is a DVD player and popcorn maker, a chill out pack with bean bag, a onesie, hot water bottle and other exciting gifts.
To donate to Sponsor a Sibling, visit: http://sponsorasibling.co.uk/.
To donate to EACH, visit: https://www.each.org.uk/.